When they were locked out of the troubled federal insurance website in its first week, Karen and Bobby Cox didn't panic. The uninsured couple from Dunedin figured they could wait until the site got fixed.
But just days after that first attempt, the Coxes lost the luxury of waiting.
Bobby Cox, a 60-year-old construction worker, learned in October he has advanced lung cancer. Now as they deal with his diagnosis, the Coxes feel no closer to securing insurance coverage than they were on the first day they logged onto healthcare.gov, the now infamous centerpiece of the Affordable Care Act.
"I don't want any bills hanging over her when I'm gone," said Bobby, who starts chemotherapy this week. They're drawing on modest savings and impressive bargain-hunting skills until they can get insurance.
The Coxes are among the millions of Americans running out of time to get insurance coverage that starts Jan. 1. Though the federal website has improved since its debut, problems persist both for consumers and for insurers, which have been getting incorrect enrollee reports from the government.
Administration officials say significant upgrades should now be in place to allow at least 50,000 users at any given moment — the level of traffic the site was supposed to have handled on its first day. No one can guarantee that the system will work well enough to withstand the rush of consumers racing to meet the Dec. 23 deadline for coverage starting Jan. 1.
What's more, the Monday after Thanksgiving is traditionally a very busy day for open enrollment, and promises that healthcare.gov would be working by late November could make demand now especially steep.
Much has been made of the fact that younger, healthier consumers are needed in order to make marketplace insurance viable for the private insurers behind it. The technical challenges are thought to be discouraging such customers.
But people like the Coxes can't wait for things to get easier.
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Federal officials say they are working on ways around healthcare.gov, including allowing consumers who are eligible for subsidies to sign up directly with insurers rather than using the government portal. Web-based brokers, such as ehealthinsurance and GoHealth, are displaying many — though not all — of the exchange plans.
But at this point, the general advice to consumers is the same as it was in early October:
Keep trying heathcare.gov. If you can't see the plans there, look for them on private insurers' websites. Call the toll-free help line — though operators also must work through the website. Call a navigator or a specially trained counselor at one of the community health centers. Make an appointment with independent insurance brokers, though they, too, must deal with the website.
It may sound like a lot of options, but in practice, it's a frustrating process, especially for people who have never made a purchase as complicated as health insurance. Those who've gone through it successfully say it required patience — sometimes a lot of it.
"I hope people are persistent and things continue to improve," said Washington and Lee University law professor Timothy Jost, an expert on the Affordable Care Act.
As the Dec. 23 deadline gets closer, those who can afford it — and are desperate — may want to buy a plan, without a subsidy, directly from an insurer, said Gary Claxton, a Kaiser Family Foundation expert on the health exchanges. If you discover before open enrollment ends March 31 that you're eligible for a subsidy, you can cancel the plan you bought and enroll in a subsidized policy, he said.
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The Coxes have spent the last month on other calculations. They called around for the best cash prices on imaging and biopsies and have been dipping into their savings to cover the costs: PET scan, $1,200; needle biopsy, $500; anesthesia, $250.
Karen, still in the purple scrubs she wears as a medical assistant, pulled out a blue folder stuffed with quotes and appointment reminders one evening last week. Bobby, sitting next to her at the kitchen table, glanced at the folder then looked away.
"I let her handle all that," said Bobby, with a wave of his hand. He bent over at his waist and let out a deep cough.
Karen, 62, can't afford the insurance offered where she works. Bobby hasn't had much of a shot at coverage in the last five years. A foreman, he's had a journeyman schedule since the economy crashed, going from one job to the next. Shortly before his diagnosis, he found a new job with a construction company, but wouldn't have been eligible for coverage for a full year. He's too sick to work now.
The couple believes the insurance exchange created under the Affordable Care Act could be their answer. Their income is likely low enough to qualify them for a sizable subsidy.
But after being stymied by the website, Karen didn't get much further with the toll-free help line that President Barack Obama has urged Americans to call. The operator was polite but could only promise to mail a paper application. It took two weeks to arrive.
"It's very complicated," said Karen, pulling it out of her folder. "You almost have to be a lawyer to understand it."
She made an appointment with an insurance broker, who told her to call back after Thanksgiving, in hopes healthcare.gov will be running more smoothly.
But she isn't stopping there. One doctor's office suggested maybe Bobby could get into a Medicaid program for the seriously ill. So she's collecting documents for that application. The cancer specialty group indicated he might qualify for charity care. So she has a file for that option as well. Bobby has qualified for Social Security disability, though the first check won't come until around April. And it would take two years under current law before his disability would render him eligible for Medicare — past the prognosis he has been given.
The Coxes asked the doctor if they could wait until Jan. 1 to start Bobby's treatment. The doctor said no.
Karen said that though the cancer isn't curable, treatment could extend his life beyond the doctor's initial estimate of around 18 months.
At the end of three months, doctors will take another scan to see how the chemotherapy is working on the cancer, which is in both lungs.
At that point, said Bobby, he might refuse more cancer treatments even if he has insurance.
"If it's spreading, I'm stopping," he said. "It does scare me. But I have to deal with it."
Jodie Tillman can be reached at firstname.lastname@example.org or (813) 226-3374.